I am learning that there are multiple levels of disability for those of us with relapsing remitting MS (RRMS.) The first level is called ‘Think’; this level comes right after the diagnosis before you really have any disability. You think about what might happen, what the future might or might not look like, and you research just what the heck MS is! I really didn’t know about it until after I got diagnosed. I knew I should be sad, but that’s all I knew, literally.
The second level is ‘Living.’ This is when you know what MS is, you know what can happen, and it does from time to time; but it rarely has any major lasting effects that you don’t mostly recover from. In this stage you live a very normal life. You probably try to live a lot healthier. You start eating better, quitting bad habits, and exercised regularly. I did all of that, in fact, I ran 2 marathons, several half-marathons, and I lifted in the morning before work. I also started juicing, just to be that more successful at not being harmed much by the lesions. You see, it turns out after almost 10 years of my MS appearing pretty benign, I had been developing lesions all along. I now had 20 lesions on my brain, and a new one on my spinal cord.
This is what pushed me into level ‘Reality.’ In this level you have to realize and try to accept that you are losing abilities and having limitations that are probably permanent. This is when you get really serious about hanging on to everything you have and keeping as positive an attitude as you can. You learn tricks to keep you working out, like doing it first thing when you wake up, or doing yoga or other less intense workouts. You learn tricks and set up resources to help you deal with all the emotional fall-outs. You learn how to make things more efficient in your house.
I am now level 4, a.k.a. ‘Hybrid.’ In Hybrid, you start needing assistance with simple tasks, like putting a coffee lid on. In Hybrid you start having so much fatigue you don’t always make it through a day at work, if you even make it there. In Hybrid you have a limited distance you can walk without a rest, like 50’, or half a stairwell. In Hybrid, I am using a walker and requesting a wheelchair at the airport. In Hybrid I have realized once again how to accept a new situation. Putting a name to it is acknowledging where you are in life. Then you can be where you are, stop crying about it, and accept that it is just another chapter. The next chapter for me is a cure, with a Stem Cell transplant, I’m sure of it!
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